Fibromyalgia Experiences

indicates books and newsletters which have been especially helpful for me. I can't stress enough, different books/newsletters are more helpful for different people.

fibro/CFIDS/MPS-type books:

Arthritis Foundation, The. Your Personal Guide to Living Well with Fibromyalgia. Published by the Arthritis Foundation, $14.95US. (A relatively nice though rather skimming-the-surface starter book by a variety of people. Includes editorial pages from people, which is nice. Also has a section on coping with the grief of finding out you have a chronic illness. It doesn't seem to think of fibro as a very disabling condition, though, which it is to a lot of people that have it. This is the book that the Arthritis Foundation's "learning to live with fibro" class is founded upon, and a friend that is on her local Arthritis Foundation board told me that in her opinion, simply buying the book is a better strategy than attending the class. She said that the class actually made her fibro worse because she had to sit still in an uncomfortable chair for a few hours per class.)

Chaitow, Leon. Fibromyalgia  & Muscle Pain: What Causes It, How It Feels and What to Do about It. Published by Thorsons Health Series, $11.95US, 5.99UK, $14.00Can. (A nice little introductory book written by an osteopath/naturopath, including suggestions for improving one's health. I liked his chapter on "The Brain and Fibromyalgia (and Chronic Fatigue Syndrome)" especially, because I like trying to understand how my brain functions differently than non-fibro people and how that affects my body.)

Elrod, Joe M. Reversing Fibromyalgia: How to Treat and Overcome Fibromyalgia & Other Arthritis-Related Diseases. $12.95US. (I've not read much of this book, but I've heard plenty of awful things about it from people that have. From other reviews I've read, Elrod apparently mixes a hodgepodge of already-well-known helpful things with snake oil "cures." He appears to largely sell books on hope alone; after all, I don't know a single person with fibro and/or CFIDS that doesn't wish these things were so easily reversible!)

Fransen, Jenny, R.N., and Russel, I. Jon, M.D., Ph.D. The Fibromyalgia Help Book: Practical Guide to Living Better with Fibromyalgia. Published by Smith House Press, $18.95US, $26.95Can. (Another good basic book, covering how to find a medical care provider, medically manage fibro, develop an exercise program, get a good night's sleep, manage pain & fatigue & stress & flare-ups, and similar topics.)

Gardiser, Kit and Kathleen Kerry, compilers & editors. We Laughed, We Cried: Life with Fibromyalgia. Published by KMK Associates, $12US. (Despite the high price for this relatively thin volume and the fact that it can be difficult to locate, this is a great little book with essays, poetry, cartoons, photos, and stuff by fellow fibromites. You can order it direct from the publisher: KMK Associates, PO Box 60246, Palo Alto, CA 94306; each is $12, plus $2 S&H for the first book & .75 S&H for each additional book.)

Goldberg, Burton, and the Editors of Alternative Medicine Digest. Chronic Fatigue, Fibromyalgia, & Environmental Illness: An Alternative Medicine Guide. Published by Future Medicine Publishing, Inc., $18.95 US&Canada. (I love this book first and foremost for the fact that it connects fibro, CFIDS, & MCS, which a lot of books don't seem to do. It goes into detail about how to try to reverse the process of these diseases, including by alternative means, and also talks about connecting them to hidden allergies. A great book.)

Goldstein, Jay A., M.D. Betrayal by the Brain: The Neurologic Basis of Chronic Fatigue Syndrome, Fibromyalgia Syndrome, and Related Neural Network Disorders. Published by the Haworth Medical Press, listed at $29.95 but I got it one-third off at $19.96 (so be on the lookout for bargains). (This is an absolutely wonderful book whose author, a doctor that specializes in neuropharmacology, has a view of these diseases that really makes sense to me! I had already read some minor articles on similar hypotheses when this book was recommended to me. If you are willing to wade through the medical jargon, it is well-worth it. Fifty percent of his patients with FMS and/or CFIDS feel dramatically better shortly after their first office visit with him. Twenty-five percent more feel better after the second visit, and twenty percent more feel better after a while. Therefore, only about five percent of his patients end up not being particularly helped by his methods. As a sidenote, if you don't want to take any sort of pharmacological drugs, this may not be the treatment for you. Among other things, Goldstein uses drugs that have been approved for other conditions to treat FMS & CFIDS.)

Goldstein, Jay A., M.D. and Katie Courmel. A Companion Volume to Dr. Jay A. Goldstein's "Betrayal by the Brain: A Guide for Patients & Their Physicians". $14.95US. (A more layperson's version of the above book.)

Kelly, Julie, M.S., R.N., and Rosalie Devonshire, M.S.W. Taking Charge of Fibromyalgia: A Self-Management Program for your Fibromyalgia Syndrome (new fourth edition). Published by Fibromyalgia Educational Systems, Inc., 500 Bushaway Road, Wayzata, MN 55391; (612) 473-6218 or (419) 843-3153, $18.95US. (This is a really wonderful workbook-type book with lots of concrete suggestions for managing fibro, and a wonderfully extensive appendix of other resources.)

McIlwain, Harris, and Debra Fulghum. The Fibromyalgia Handbook. $16.95US. (I've not read this one. It appears to be another decent, basic book. Some PWFMS highly recommend it; others aren't as impressed.)

 Moeller, Mary, L.P.N., and Dr. Joe M. Elrod. The Fibromyalgia Nutrition Guide. Published by Woodland Publishing, $12.95US. (A fairly decent slim book on foods that help relieve the pain and other symptoms of fibromyalgia. Includes recipes, which take up about half the book.)

Starlanyl, Devin, M.D. and Mary Ellen Copeland, M.S., M.A. Fibromyalgia & Chronic Myofascial Pain Syndrome: A Survival Manual. Published by New Harbinger Publications, Inc., $19.95US, $28.95Can. (Another good basic book on fibro and the less-talked-about MPS, which often co-exists with fibro. This book is considered by many patients and physicians to be one of the "bibles" for these conditions. An excerpt from this book is in internet-brochure form and reproduced at my site, here. Devin also has a website here and participates in some of the fibro mailing lists.)

Starlanyl, Devin, M.D. The Fibromyalgia Advocate: Getting the Support You Need to Cope with Fibromyalgia and Myofascial Pain Syndrome. Published by New Harbinger Publications, Inc., $18.95US. (The more recent book from one of the authors of the above book. It covers some of the stuff her other book covered, with more updated and sometimes expanded information. She also includes new information and sections, including a lot of stuff to arm yourself with when you go to see practitioners about your illness[es].)

Teitelbaum, Jacob. From Fatigued to Fantastic! $11.95US. (This is another book I've not read much of myself. Some people with chronic fatigue diseases really find it valuable, although I'm in the "skeptical" category myself.)

Verrillo, Erica F. and Lauren M. Gellman. Chronic Fatigue Syndrome: A Treatment Guide. Published by St. Martin's Griffn, $15.95US, $21.99Can. (A good basic book on CFIDS, which often occurs with fibro [some doctors argue that they almost always co-occur and that the same thing can be diagnosed as either fibro or CFIDS, depending on the diagnosing doctor]. A large book with a wide scope, focusing especially on the symptoms that come with CFIDS (including a nod towards fibro, although they're not totally correct in their info on it *heh*) and on ways to manage those symptoms. Also has a large section on treatment options, both medical and "alternative.")

Williamson, Miryam Ehrlich. Fibromyalgia: A Comprehensive Approach (What You Can Do About Chronic Pain and Fatigue). Published by Walker and Company, $14.95US. (Yet another good basic book, including the basics and some other helpful sections, such as theories about the causes of fibro, illnesses that are similar to or related to fibro, fibro and your private life, and fibro and work [including a bit on the ADA and how it can help people with fibro if they are having some difficulties with fibro at work].)

Williamson, Miryam Ehrlich. The Fibromyalgia Relief Book: 213 Ideas for Improving your Quality of Life. Published by Walker and Company, $14.95US. (A relatively good, more recently published book by the same author that wrote the above book. She has fibro herself and writes about all kinds of ways to deal with all the things that fibro brings up in your life and health. For example, this [along with Devin's first book] is one of the two books I own that had suggestions for helping me adjust travels enough to cause minimum pain and disruption. There are some things about this book that aren't the greatest -- like how she seems to assume that everyone with fibro lives with others, particularly with a spouse and children, and, well, let's just say that she's much more obsessive about keeping things perfectly clean than I am; it's one of the things that I became more lax about after this disease flared up -- but it's still a pretty good resource.)

fibro/CFIDS/MCS-type magazines/newsletters:

Fibromyalgia Network Newsletter
Fibromyalgia Network
P.O. Box 31750
Tucson, AZ 85751-1750
Tel: (800) 853-2929
Fax: (520) 290-5550
www.fmnetnews.com
Quarterly publication; $19 in US, $21 US funds in Canada.
A helpful newsletter for people with fibro & CFIDS.

Arthritis Today
Arthritis Foundation, Inc.
1330 West Peachtree St.
Atlanta, GA 30309
Orders: (800) 933-0032
www.arthritis.org
A nice little magazine you get when you join the Arthritis Foundation. Not as specialized to fibro/CFIDS as the above newsletter, but it also has some helpful articles. Also, by joining the Foundation you can go to fibro support groups, water exercise classes, etc. (No, fibro isn't technically an arthritic condition, but it is often grouped with them.)

The Fibromyalgia Times
Fibromyalgia Alliance of America
P.O. Box 21990
Columbus, Ohio 43221-0990
(614) 457-4222
$25/year U.S., $30 Canada, $35 in other countries. I have found this newsletter especially helpful and humorous. It contains several well-written and informative articles per issue.

Blazing Tattles
P.O. Box 1073
Half Moon Bay, CA 94019, USA
(650) 712-0772
www.concentric.net/~blazingt/

A monthly publication about people who are chemically sensitive, people who've been injured by chemicals, their health concerns, & living healthily in general.

There is a rather comprehensive list of other Fibro Newsletters at the Responsible & Adequate Fibro Treatment site.

books on related conditions/illnesses:

Ivker, Robert S., D.O. Sinus Survival: The Holisitic Medical Treatment for Allergies, Asthma, Bronchitis, Colds, and Sinusitus. Published by Penguin Putnam, $13.95US, $18.95Can. (An excellent book by the president of the American Holisitic Medical Association. A good portion of people with fibro/CFIDS/etc. have at least one or two of the conditions covered in this book. This book has tons of ideas for helping improve your quality of life and reduce the pain caused by these conditions!)

Lorenzani, Shirley S., Ph.D. Candida: A Twentieth Century Disease. Published by Keats Original Health, $4.95US. (There are a ton of books out there on candida, and this happens to be the one I've read. Candida is the yeast that's found in the body. There's naturally some of it, but in many people today, it's overgrown and ventures over into "disease" territory. Many health care practitioners have theorized that many people with fibro/CFIDS/etc. may have candida overgrowth. It may be worth checking into for you.)

working on this section this week.

books on chronic illness in general:

Donoghue, Paul J., Ph.D., and Mary E. Siegel, Ph.D. Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness. Published by W.W. Norton, $12.95US, $16.99Can. (An excellent book on what it's like to live with invisible chronic illness, broken into two main sections, "The Experience of Invisible Chronic Illness" and "Coping with Invisible Chronic Illness". Fibro, CFIDS, IBS, and migraines are among the invisible chronic illnesses discussed.)

Lemaistre, Joann, Ph.D. After the Diagnosis: From Crisis to Personal Renewal for Patients with Chronic Illness. $12.95US. (I have not read this book myself, but some other people with chronic illnesses have found her viewpoint helpful after learning they have a chronic illness.)

Napier, Kristine, M.P.H., R.D. Power Nutrition for Your Chronic Illness: A Guide to Shopping, Cooking, and Eating to Get the Nutrition Edge. Published by Macmillan, $19.95US, $27.95Can. (This hefty volume is a valuable resource for almost everyone with a chronic illness. It talks about general stuff -- like how it can be harder to shop and cook with chronic illnesses -- and has specific sections on a number of chronic illnesses, including an athritis chapter that has a section on fibro. She also has more tips and info, and a large section of yummy, very easy to cook recipes. The author has systemic lupus, and created most of the featured recipes while she was wheelchair-bound after having a severe relapse of her lupus.)

Topf, Linda Noble. You are Not Your Illness: Seven Principles for Meeting the Challenge. $12.00US. (I've not read this book, but some other people with chronic illnesses have found her point of view helpful in learning to adapt to a shifting way of living.)

Wells, Susan Milstrey. A Delicate Balance: Living Successfully with Chronic Illness. $28.95US hardcover; unsure of paperback cost. (I've only briefly skimmed this book, but it appears to basically be what its title indicates: A book about realizing you have a chronic illness, seeking correct diagnosis and adequate treatment, and moving on to try to continue to live "successfully". I am unsure exactly what she means by "successfully," but I know some other people with chronic illnesses that have found her perspective encouraging.)

qigong-related books:

Carnie, L.V. Chi Gung: Chinese Healing, Energy, and Natural Magic. Published by Llwellyn Publications, $17.50US, $24.50Can. (This is a pretty good basic book on qigong and the beliefs behind it. I find the author's pontificating to sometimes be annoying, but other people don't mind it. I was reading this book and came to a stuck-in pontificating section that especially annoyed me, and I thought, "I wonder who publishes this book," went to check, and then thought, "Aha! This has Llwellyn written all over it, indeed." [Llewellyn tends to publish the flaky kind of New-Age-y stuff, although sometimes you can get past that in their books.] There are sections I skim or skip to get to the better ones [like her treatises on "You Westerners just have to open your mind to the possibility of chi existing" -- obviously I'm already doing that or I wouldn't be reading the book, duh]. Seriously though, if you can get past that stuff, it's a pretty good book.)

Chuen, Master Lam Kam. The Way of Energy: Mastering the Chinese Art of Internal Strength with Chi Kung Exercise. Published by Simon & Shuster Inc., $15.95US, $21.50Can. (This is a relatively slim but very readable book that teaches some qigong exercises, both basic and more advanced. Focuses more on the physical aspects of qigong than other related books I've read, but it's still decent. Don't be fooled by the seeming simplicity of the exercises; qigong is not as easy as it looks.)

MacRitchie, James. The Chi Kung Way: Alive with Energy. Published by Thorsons, $12US, $21Can, 9.99UK. (An absolutely wonderful book on chi kung/qigong that both beginners and more advanced practitioners can use. Written in clear, concise, straightforward language. Features sixty-five exercises to try. Also features a lot of information on the beliefs behind qigong.)

Yang, Jwing-Ming. Back Pain: Chinese Qigong for Healing & Prevention. Published by YMAA Publication Center, $14.95US, $19.95Can. (This book has some general basics and a large section on the back/back pain in particular. Somewhat helpful in the effort to manage back pain, which a lot of people with fibro have.)

miscellaneous books of interest:

Balch, James F., M.D. and Phyllis A. Balch, C.N.C. A to Z Guide to Supplements (based on Prescription for Nutritional Healing). Published by Avery Publishing Group, $6.95US. (This is a handy, inexpensive guide to supplements and nutrition that I have found very valuable in sorting through all the propaganda and misinformation out there. Written in concise, clear style as well.)

Berthold-Bond, Annie. The Green Kitchen Handbook. Published by HarperPerennial, $15US, $21.50Can. (This is a very nice book about all the ways you can detoxify your kitchen. Includes very practical tips on everything from learning how to can to using root cellars to store stuff. Also includes recipes for making home cleaners out of regular kitchen ingredients, among other things.)

Bower, Lynn Marie. The Healthy Household: A Complete Guide for Creating a Healthy Indoor Environment. Published by Healthy House Institute, $17.95US. (This is a wonderful resource on detoxing your home, written by someone who's had Multiple Chemical Sensitivity for many years. Covers everything from the obvious stuff like air and water to stuff like wrapping paper and cutting boards. Includes lots of resources for where to buy stuff that's okay for the chemically sensitive.)

Carlson, Karen J., Stephanie A. Eisenstat, and Terra Ziporyn. The Harvard Guide to Women's Health. Harvard University Press (reference library), $24.95US. (An excellent general medical reference book written in layperson's terms; I've had it for several years, and it was actually the very first place I read about fibromyalgia, back when I first suspected that I had it.)

Steinman, David and Samuel S. Epstein, M.D. The Safe Shopper's Bible: A Consumer's Guide to Nontoxic Household Products, Cosmetics, and Food. Published by Macmillan, $14.95US, $19.95Can. (An incredibly valuable resource book for people looking to detoxify their lives. Has specific product ratings and general tips.)

Steinman, David and R. Michael Wisner. Living Healthy in a Toxic World: Simple Steps to Protect You and Your Family from Everyday Chemicals, Poisons, and Pollution. Published by Perigree, $12.95US, $18.95Can. (This is a wonderful, very readable book with a lot of little-talked-about but very important information and lots of concrete steps to help detoxify your life.)

a starter selection of fitness books:

A Woman's Book of Power: Using Dance to Cultivate Energy by Karen Andes. Published by Perigee. (This was highly recommended to me by someone that uses dance as exercise, & greatly liked Andes' attitude as well.)

Keep Moving! It's Aerobic Dance, by Esther Pryor and Minda Goodman Kraines. Published by Mayfield Publishing Company. (Another great book on dance.)

Yoga Made Easy by Howard Kent. Published by the People's Medical Society. (The best yoga book I have found.)

Get Fit While You Sit: Easy Workouts from Your Chair by Charlene Torkelson. Published by Hunter House Publishers. (This book is very helpful for people with chronic illnesses, as it is a workout that can be done while sitting down.)

Complete Stretching: A New Exercise Program for Health & Vitality by Maxine Tobias & John Patrick Sullivan. Published by Alfred A. Knopf. (A nice book of stretches.)

a starter selection of fitness & related videos:

Callanetics, a video by Callan Pinckney. She has other books & videos on the market as well. (This was highly recommended to me by another person with immune disorders.) (the rest of this list is culled from the resources appendix of Taking Charge of Fibromyalgia:)

Fibromyalgia Exercise. By Patty Bourne, a kinesiologist. "Excellent 30-minute video illustrating correct FMS exercise regimen." $24.50. OTM Hospital, Physiology Dept., 327 Reynolds Street, Oakville, Ontario L6J 3L7, Canada.

Stretching: Fibromyalgia Exercise Video. "36-minute video includes an explanation by Dr. Sharon Clark of why stretching is so important for people with fibromyalgia and a demonstration featuring individuals with FMS." $24.95. Oregon Fibromyalgia Foundation, 1221 SW Yamhill, Suite 303, Portland, OR 97205. "Dr. Clark is in the process of developing a strengthening video for people with fibromyalgia. When completed, it will [also] be available at the Oregon Fbromyalgia Foundation."

Fibromyalgia: Face to Face. "14-minute insight into living with FMS from people, including children, who are coping with this syndrome. Also features three prominent FMS research doctors." $19.95. Ontario Fibromyalgia Association, 250 Cloor Street East, Suite 902, Toronto, Ontario M4W 3P2, Canada.

Fibromyalgia & You. By I. Jon Russell, M.D., PhD. "90 minutes of up-to-date information on all aspects of fibromyalgia. It features various fibromyalgia researchers and physicians and five patients who describe their stories." $34.95. Fibromyalgia Information Resources, P.O. Box 690402, San Antonio, TX 78269.

Fibromyalgia: What Do We Know. "30-minute video on coping with FMS as described by patients who are successfully managing their illness. Reviews sleep disorders, treatment, medications, exercise, stress management, and other pain remedies." $19.95. FM Association of B.C., PO Box 15455, Vancouver, BC V6B 5B2, Canada.

Got another book you think I should add to this list? Or just have a book to recommend that I read? Email me the author, title, and what you think of it. Thanks!

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